To those of you who come here to read my views on science and religion and politics, this post will probably come as something of a shock. But in the process of dealing with a very painful situation, my thoughts have turned inward. That turning inward is fueled also by the fact that next week will be the 7th anniversary of my mother’s death. And it is that story that I feel compelled to tell.

My mother had quite a life. She gave birth to her first child, my brother Jack, at the age of 16. Jack’s birthday would forever be a bittersweet day for her, however, because her father died in a car accident on his way to the hospital to see his first grandson born. My mother had 5 children by the age of 23, four with her first husband and one with my father. I was number 6, but I would come along many years later. She never graduated from high school, but somehow managed to build a career that ultimately led to a high administrative position with Michigan State University.

When she was 29, she became pregnant with me. She loved to tell the story of how she thought I was a case of the flu. She hadn’t been feeling well and went to see our family doctor. He informed her that she would be getting over that case of the flu in about 7 months. She was stunned, and she went to my father’s office in tears, thinking he would be upset. Alas, he was thrilled by it and it became a big turning point for him as well, but that is another story for another day. My parents divorced when I was 8, but it was the most amazing divorce you ever saw. They divorced better than most people marry and remained friends until the day she died. She married a third time a couple years later, to my stepfather Bill, and they remained married until she died. That poor man didn’t know what he was getting into, talk about marrying a whole family!

About 11 years ago, my mother’s health was getting very bad and she went into the Mayo clinic for a full evaluation to find out what was going on. After it was done, they flew back to Michigan and met with the whole family to give us the news. She had been diagnosed with an extremely rare condition called Alpha One syndrome. There is a protein in your lungs whose function is to clean the lungs out, and this cleaning process goes on all day every day, but her body did not produce that protein. And after smoking for 27 years, without even that normal process of cleaning going on, she was reduced to about 25% total lung capacity. She would have to have a transplant, but we were fortunate that she lived only about 45 minutes from the University of Michigan Hospital, one of the premier transplant centers in the world. One of the things that makes UofM Medical Center so incredible (and I say that as a diehard MSU guy) is that the transplant unit there really is a community. The whole family (all 248 of us) went down and met with former transplant patients and their families, as well as others who were on the list. All of the transplant patients knew each other, as much by their number as their name – single lung transplant #34, heart/lung transplant #8, and so forth. Those who had received transplants and their families would return there once a month to meet with and encourage the people still on the waiting list and their families, give them tips on how to handle the stress and the physical recovery after the surgery, and so forth. Everyone swapped phone numbers and they really did reach out to each other. It kind of formed one big family. One woman in particular, Mary, was like the center of this whole transplant universe. She had both a heart and a lung transplanted, and she was an absolute dynamo. She worked tirelessly to promote organ donation, running in 5 and 10k races to show what transplant patients could do and how much the donation of an organ can do for someone. One of the most incredible and inspiring people I’ve ever met.

Anyway, my mom went on the transplant list. She had some things going for her. She was only in her mid-50s, which was fairly young for a transplant and was in otherwise good health. Those things are important in terms of whether you get picked. There’s a huge shortage of donated organs, you see, and the doctors are forced to ration them out by such factors as who is likely to get the most use of it. Still it took 3 years to get a lung, during which time we had a couple of close calls. She got pneumonia about 2 years in and came very, very close to dying. She recovered from that, but still had to wait another year to get picked. I’ll never forget that phone call. It’s hard to believe it was 8 years ago. I was at work and one of my employees took the call and transferred it to me. I picked up the phone to hear my stepfather say, “Get to Ann Arbor as fast as you can, they have a lung for your mom.” I made the normally 2 hour long drive to Ann Arbor from where I was in a time that would make Dale Earnhardt jealous, even in the middle of what was a horrible late winter storm. In fact, about an hour after I got there, my older sister and her husband were in a car accident just outside of Ann Arbor and were taken to the same hospital my mother was in. Thankfully, they were both okay, just a few bruises, but I spent half the time while my mom was in surgery running back and forth between the 4th floor and the emergency room in a bit of a panic. Later that night, I drove to Detroit to pick up my brother Jack, who had flown in from Colorado. The whole family was together for the first time in many years. God, what a joyous occasion it was.

She came through the surgery perfectly. The tragic death of one organ donor, through the brilliance and dedication of those doctors and nurses, saved 4 lives that day – two single lung transplants, a heart transplant, and a liver transplant. The most difficult problem for lung transplant patients is not so much the surgery itself as the recovery from it. They have to split your rib cage and the physical trauma on the body is horrendous. It takes a long time and a great deal of physical therapy to recover from it. Unfortunately, about 3 months after the surgery, my mother slipped and fell and blew a couple of disks in her back badly, which prevented her from doing the physical therapy required to complete the recovery. From that point on, she got worse and worse. A few months later, she began to experience rejection, which is pretty normal. About half of all transplant patients go into rejection. Of that half, about half make it and half don’t, and they don’t really know why that is. But because her body had never recovered from the physical trauma of the surgery, she just didn’t have the resources to fight the rejection. Ultimately, she just gave up, and who can blame her? In the last couple of months, I talked to her many times about it and she would say, “I just wish I could go to sleep and have it all be over with.” Well, that’s what ended up happening.

At one point she went back into UofM hospital for a minor surgical procedure to install a stent in the new lung to hold a valve open, in the hope that it might help. I had to leave the state for a conference during that time, so before I left I went to visit her and she expressed again that she was just so tired. I told her how much I loved her and I encouraged her to go down and have this procedure done, maybe it would help her feel better so she’ll want to keep fighting. And if it didn’t, that was okay. The next day I left for my conference and on the second day I was there I was paged by the hotel operator. My stepfather’s voice on the other end of the phone again, but this time the tone was more ominous. “Can you get back here any time soon? Things didn’t go well with the surgery.” I didn’t even wait to call my boss, I grabbed my things from the hotel room and hit the road as quickly as I could. When I got there, my stepfather told me all that had happened. She had gone into cardiac arrest while in the recovery room, still under anesthesia. They had managed to save her but she was on a ventilator and she had been down for nearly 9 minutes by the time they got her revived, meaning she would be severely brain damaged and would probably never come off the vent. We waited for the whole family to arrive and Dr. White, the head of the transplant unit and the man who performed the transplant, came in to talk with us and answer our questions. What he told us was that basically there was no hope for a recovery, that they could probably keep her alive indefinitely, but she will never be able to live without the ventilator and the other machines, nor would she be the same person she was before because of the brain damage.

My mother had a living will and it made very clear that she did not want to live under those circumstances. The ultimate decision was up to Bill, but he wanted the family to make it together. We sat together in a private waiting room. We hugged and we cried and we agreed. It was time to let her go. The next morning, we all met in her room. The doctors had upped the dosage of morphine and who knows what else to make sure that she would go peacefully. Gathered around her bed, holding hands, were all of her children, including a few “strays” that she had raised as her own, her husband and her two best friends. There were 2 doctors and 2 nurses there as well, and they shut off all of the machines except for the heart monitor. As we stood there holding hands, tears running down our faces (as they do mine again today as I recall this), we watched the monitor slowly count down….67….48….30….18….5….goodbye, Mom. I love you. It was the most profound experience imaginable. Even the doctors and nurses, who must be accustomed to such things, were wiping tears from their eyes. Bless every single one of them. Not only were they brilliant at their jobs, they showed such incredible humanity to us throughout the entire 4 year ordeal.

The story doesn’t end there. A short time after my mother found out she needed a transplant, she and I had a long talk and she asked me if, when the time came, I would give the eulogy at her funeral. At that time, I had just decided to get out of stand up comedy, and I remember joking with her, saying, “Mom, I don’t do stand up anymore. I don’t need the stage time that bad.” (insert rimshot) She laughed. I told her that I would be honored to do that. But here I was, face to face with actually having to DO it and not knowing what I would say. That night, as I lay in bed in the hotel that we were all staying at, I thought and cried and thought some more. Suddenly, at about 4 am, I got this thought….how many times had I heard someone say, or even said myself, “When I die, don’t be sad. Don’t mourn my death, celebrate my life. Tell funny stories about me and laugh.” We’ve all heard it, we’ve all said it, but who actually does it? Me, damn it. The next morning I gathered all of my brothers and sisters together and I said, “I want to hear every funny story of us growing up. I was too young to remember a lot of them, I know, so you guys have to fill me in. I want every stupid thing we ever did to stress her out, every boneheaded thing we ever did that made her say ‘what the hell were you thinking?’. All of it.” And we sat and we laughed and we told stories and we pointed at each other and we got red in the face with embarrassment at the things we did. And from that flowed this eulogy, it just poured out of me as I typed. And 3 days later, at a funeral home in Lansing, Michigan, we had 200 people, on the most somber and mournful of occasions, laughing. I’m sure there were some there who thought it irreverent and inappropriate, as I told stories about me sleepwalking when I was 6 years old and peeing on the living room rug, of my two older brothers and the mischief they caused on a daily basis growing up. I don’t care. We were celebrating her life, not merely mourning her death. And somewhere, if she’s still there, I know she was smiling.

With any death, there is a normal process of grieving that one must go through. At some point you will face it, if you haven’t already, and my only advice is to allow yourself to experience it all – anger, sadness, bitterness, understanding, peace. None of those feelings are “wrong”, just don’t linger on any of them for too long except the last one. I knew when I wrote the eulogy for my mother that I would have to address the religious questions delicately. I don’t have any idea what happens to us when we die, if anything. I’d like to believe that we go on, that we will be reunited after death, but I know that what I’d like to think isn’t necessarily the truth. So what I said then is what I will say now. There is one form of immortality that I know, beyond a shadow of a doubt, does exist. Each of us lives on in the lives of those we touched while we are alive.

The night before the funeral, there was a viewing. I was there along with most of the family to greet all of her friends and colleagues who came to give us their condolences and their kindness. There were small children there, my nieces and nephews, running around and making noise, relatively oblivious to the somberness of the situation, focused with great commitment on the task of being small children. My mother’s best friend, Denise, whispered to me, “I hope no one is offended by all of the kids being so noisy.” I just laughed and said, “Denise, do you think a woman who had some 20 grandchildren would be comfortable in a room that wasn’t filled with a child’s laughter? If it was quiet and morose in here, she’d get up and leave.” But I know that in the lives of every one of those grandchildren, all now well into their pre-teen or teenage years and some even adulthood, she lives on. They will think of her when they go fishing, remembering how grandma took them fishing at the cottage and taught them how to put the worm on the hook. They will think of her when they make the pies she taught them to make in her kitchen. They will think of her, as I do now, in times of great difficulty and they will remember the lessons she taught us all about perseverence and, more than anything, about the importance of family. She lost both parents and her only brother when she was barely an adult and she said many times that the reason she had so many children was so that we would never be alone. She succeeded. Thanks, Mom. You did good.

Comments

I honestly don’t know what to say. I am crying.
Your mother sounds like such a wonderful and strong woman. Of course she wouldn’t have been “offended” by the sound of children laughing at her viewing! What an absolutely beautiful way to celebrate her life.

It takes great courage to share such painful (and yet such beautiful stories). Thank you.

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